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ICN Editorial - Understanding The Complex Issues of Nerve Stimulation
March 13, 2001

One of the challenges that we face in running message boards for IC is that we often have patients with different needs. In the case of nerve stimulation, these diverse needs are profound. Some patients trying Interstim have had favorable experiences while others have had poor results from their procedures. Some patients want clear information on the pros and cons of trying nerve stimulation, while others need to ask specific questions about trials and surgery. To provide clearer discussions, we’ve created four new message boards:

Nerve Stimulation – Considering it?
Nerve Stimulation – Undergoing Trials or Surgery
Nerve Stimulation – Success Stories
Nerve Stimulation – Challenges or Negative Results

We hope that this change will provide a forum for all nerve stimulation patients. We invite those who are considering SANS or Interstim to post in our considering it board. We encourage patients who have had success stories to post their results to inspire others. For those who have had disappointing results, we hope that you will share your experience and offer much needed support to others who face the same set backs.

Nerve stimulation, particularly sacral nerve stimulation, is an intensive treatment that is not FDA approved for IC. While some doctors are enthusiastically promoting this surgery to IC patients, patients can be easily confused about where it belongs in an IC treatment protocol. It is not a first line treatment. Patients should have tried other treatments first, such as various oral medications. Medtronic, the manufacturer of Interstim, confirms this on their web site: “The Medtronic InterStim® Therapy for Urinary Control is indicated for the treatment of urinary urge incontinence, urinary retention, and significant symptoms of urgency-frequency in patients who have failed or could not tolerate more conservative treatments.”

If you are considering Interstim or other nerve stimulation procedures, we encourage you to be an empowered patient. Explore the pros and cons of this therapy carefully before you consider undergoing a trial or, if the
trial is successful, surgery. Talk with patients who have had success stories AND talk with patients who have had poor results. Walk into the operating room with your eyes wide open about the risks.

You can read more about it at:

• Medtronic
  
• A Meet the IC Expert Transcript with Dr. Steven Siegel
  
• ICN Message Boards

If you had a negative experience with any medical device used in your treatment (i.e. serious adverse events, potential and actual medical product errors, and product quality problems associated with the use of the device), you should consider filing a report with the FDA's Medical Products Reporting Program.. aka Medwatch. It is VERY important that the FDA has an accurate record of problems with any medical device. Reports can be filed by patients, or doctors or the company. Reports can also be filed anonymously to protect your privacy. For more information, please visit their web page at: https://www.accessdata.fda.gov/scripts/medwatch/